Made of Gray

PERCS

SPML Cast Removal Day

Raising the Rare ChildHolly D. Gray1 Comment

This morning Caleigh was able to have her casts removed. It's been one month and four days since her SPML surgery. We've been counting down the days on a calendar hung right next to her bed and boy can I tell you that she was so excited for this day. 

SPML Cast Removal Day via madeofgray.com

The removal of the casts was uneventful. Thankfully there weren't any sores or skin breakdown during the big reveal. Caleigh's skin is thin and scaly. We have instructions to gently clean the skin and not exfoliate at all. It'll take some time for the skin to return to normal. 

I asked Caleigh this morning if she thought that the surgery was worth it and she immediately said yes. Her legs are less spastic, tight and generally they seem to be more comfortable. She says that her hip isn't healed of pain, but that it is better than it was. What was once an all out olympic sport just to get her in the van booster seat is now manageable. Same goes with so many other everyday activities. This is a big win in my book. Caleigh's comfort was the number one priority when choosing to do the procedure. 

SPML Cast Removal Day via madeofgray.com

Caleigh still has another month of wearing her knee immobilizers at night. She's not a huge fan of them, but has definitely settled into the routine. 

In two days we will be picking up Caleigh's new AFOs and then she will settle in for a few months of strengthening before we head back to Houston in June for our follow-up with Dr. Yngve. Overall, we see great positives with this procedure and so far we're happy with the results. 


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How To Keep A Cast Dry In The Shower

Adaptive ProductsHolly D. GrayComment

As soon as we found out that Caleigh was going to have fiberglass leg casts; I knew that we had to simplify her already time consuming shower time. I have fond memories of my brother's arm cast. It stunk in the general six year old boy kind of way and definitely got wet often. I remember taping black trash bags to his arm for showers. Since Caleigh is so sensitive to tape adhesives this was the last resort approach. There had to be a better way to shower while keeping Caleigh's casts dry....

So I went shopping on Amazon and found the Seal Tight Freedom Cast/Bandage Protector.

Genius. 

How to Keep A Cast Dry In The Shower via madeofgray.com

How to Keep A Cast Dry In The Shower via madeofgray.com

I ordered the Pediatric leg length, but for Caleigh's little legs I could have ordered the pediatric arm length. You can see in the image below how much length is left over. I could wear the darn things. 

For ten bucks a piece and prime shipping it was totally worth every penny. We pop the membrane on and over each leg cast and start showering with no worries. 

So far we've had no issues with leaks or with the membrane being too tight. It's amazing when we find products that can simplify and speed up daily tasks. I tend to fall in love and shout from the roof tops. 


ONE DAY

An ongoing series of waste collections from medically fragile individuals over a 24 hour period. 

Last Fall I started the One Day Project. I'm asking those of you with medically fragile children or family members to collect the waste from a 24 hour period and send it to me. With this shipment I then curate a photograph and installation. I will send you a print of your One Day and postcards that can be mailed to anyone you chose including your representatives. My goal with this ongoing project is to have hundreds if not thousands of these portraits. Please visit my portfolio for more information on collection and shipping details. 


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Two Weeks Post Selective Percutaneous Myofascial Lengthening (SPML)

Raising the Rare ChildHolly D. GrayComment

Caleigh has been doing really well since our return home from Galveston last week. This Friday marks two weeks since the SPML surgery. We can already see an amazing difference in her tone at this point. It has relaxed her hamstrings and adductors extremely well. 

Two Weeks Post SPML via madeofgray.com

The bruising is still pretty bad from the actual procedure, but seems to get better each day. The tiny incisions are really unnoticeable. Caleigh is still having quite a bit of pain and her need for Tylenol varies each day depending on how much she is doing. The past few days have been a little rough with leg muscle spasms. I would call them twitches of pain and they seem to be causing discomfort. 

We've now perfected our evening waterproofing routine. We start with the knee immobilizers turned upside down so that the narrow ankle end is actually on Caleigh's thighs. This is followed by two 4 gallon trash bags on each leg so that everything is protected in case of an accident. The bags are each tucked into the immobilizers so that we don't have to use any tape on her sensitive skin. It's a lot of work and I honestly can't imagine having to sleep that way. Caleigh is such a trooper. 

Sleep has been a major issue. Her comfort at night isn't ideal with the knee immobilizers. Caleigh wakes up several times a night as well as getting up super early. I'm used to her waking during the night for position changes or needing to use the restroom multiple times, but getting up at 4am doesn't fly around here. We're all feeling it.  

With less than great sleeping conditions and not feeling well, Caleigh's behavior and willingness to get back into her routine hasn't been stellar. Each day has been a tiny bit easier and we are hoping it continues to move in that direction. 


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SPML - The Unexpected Return to the Texas Coast

Raising the Rare Child, Traveling w/ DisabilitesHolly D. GrayComment

Three nights. We made it three nights before Caleigh’s short bowel syndrome caused issues with her SPML casts. Her guts had shut down during surgery on Friday. Sunday mid-morning they thankfully woke up, but wouldn’t stop or slow down. 

Sunday night into Monday, Caleigh woke up with liquid stool from head to toe. The “to toe” part was the issue. It was in her cast. We cleaned it as best we could, I threw all the laundry, including her knee immobilizers into the wash and we went back to bed. 

The next day I started making phone calls and we soon had an appointment in Galveston the following afternoon. So we were home for two days before loading up and heading back to South Texas. 

We arrived at Dr. Yngve’s clinic and they removed the offending cast. The stool had soaked up to her ankle and with it being so acidic we were grateful for a quick removal. Dr. Yngve made sure the angle and area was okay and then she got another purple cast. Caleigh is healing as expected. Her bruising is normal and her need for tylenol is becoming less.

We booked a hotel room on the ocean this time around and made the most of our one night on the coast. The sun was warm, but the wind was gusting 20-40mph the whole time. We didn’t explore as much as we would have otherwise. Maybe we’ll inspect the coast a bit more for Caleigh’s four month follow-up. 

At bedtime, we now put Caleigh’s knee immobilizers on over her casts and then wrap four gallon trash bags over those. She wakes up sweaty, but at least they are protected from any other diaper mishaps. 

Give or take 1200 miles... the Lesson was Learned.


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